Dystonia: A worthy cause

Help eliminate pain and suffering for many

By Marwah Baidoun
Staff Writer

September is a month to raise awareness for dystonia, a chronic movement disorder where muscles persistently contract uncontrollably without any forewarnings. When the contraction happens, it causes the affected body part to twist unwillingly, which causes the result of repetitive movements, irregular poses or both. The movement of the twist looks like a tremor, and Dystonia causes change and damage to the nervous system that can be categorized by medical physical appearance.

Image found on Google Images.

Image found on Google Images.

Common symptoms include speech problems, cramping of the foot and intense blinking. It is hard to get diagnosis, and people are likely get misdiagnosis. The pain and disability of the disorder may be a minor to unbearable.

Krista Koehler, who has been suffering with Dystonia for over 17 years, said, “People with dystonia are trapped in their own body.”

The discease is ultimately divided into 3 main categories. The most common form of dystonia is called focal dystonia, which is when only one muscle in the body is affected. There are many forms of focal dystonia that depend on which muscle is affected in the body. Segmental dystonia is when a group of muscle has been affected and generalized dystonia is when the entire body has been affected.

The saddest part about the disease is that there is still no know cure or cause. While there are many treatment choices, these will not take away the suffering and pain in the everyday life of the affected individuals. The treatments are meant to eliminate some of the affected individual’s pain, but due to the unexpected twist of the muscles that cause discomfort and pain, people with dystonia have trouble carrying on a normal, comfortable life.

Koehler said, “One can see as many or more than 13 doctors before getting the right diagnosis.”

The Dystonia Medical Research Foundation (DMRF) websites in 2014 said, “Estimates suggest that no fewer than 300,000 people are affected in the United States and Canada alone.”

The DMFR’s mission is to advance research for more treatment and ultimately a cure, to promote awareness and education, and to support the needs and well being of affected individuals and families. They help all forms of dystonia; they unite everyone together, the one suffering from dystonia, loved ones, researchers and doctors, so they can improve aid. The organization has been supporting people and loved ones with dystonia for over 40 years’ now.

Stan Fahn, who is a medical doctor in New York, did research on dystonia research and he has become an expert of dystonia. According to DMRF, he said, “One of the concerns is that there are doctors out there who don’t know dystonia, and this new modified definition will maybe give them a better handle on it when they see a patient with dystonia, to figure out exactly what kind they have and where that patient fits in to the classification scheme.”

While there is research already being done, it is important for everyone to be aware and raise or donate money to further investigate a cause and cure for the dystonia. The more research that is funded, the faster scientist will be able to efficiently help affected individuals release them of suffering.

The DMRF can be reached by phone at 800-377-3978 and by email at dystonia@dystonia-foundation.org. People are also encouraged to visit the website at http://www.dystonia-foundation.org/ for more information or to donate to an earnest cause.